The Centers for Medicare & Medicaid Services (CMS) recently released a collection of resources designed to support state Medicaid and partner agencies in developing the supports and services being delivered to adults with I/DD and their aging caregivers. These resources detail ways that agencies can anticipate and meet the needs of aging caregivers and adults with I/DD, design person-centered planning processes across the lifespan, develop policies to support aging caregiver needs, and demonstrate innovative strategies that states are using in key focus areas. The materials can be used by state agencies, providers, and aging and disability networks to engage stakeholders and plan for the design and implementation of future services and supports using data to identify current and future service demands, develop interagency partnerships and relationships, and focus on assessment, early identification, and training to help families better navigate support as their needs change across the lifespan.
The resources are especially important because the number of people with I/DD receiving Medicaid home and community-based services and living with family has increased by 143% between 1998 and 2018. An estimated 1 million households in the U.S. include an adult with I/DD living with and supported by an aging caregiver, and this number is growing.
As the federal agency leading the implementation of the National Strategy to Support Family Caregivers (the Strategy), ACL is pleased to share resources that can advance implementation of the Strategy and emphasize the importance of ensuring that family caregivers are appropriately recognized and supported. The advisory councils created by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act jointly developed the Strategy in collaboration with ACL and other federal partners with extensive input from the public (including family caregivers and the people they support).
The ACL programs included in the set of CMS resources are: